Tuesday, 31 January 2017

What have I tried?

I'm
really sick! Still!

I've
been unusually fatigued since March 2016 and really sick (unable to
leave the house and sometimes unable to even talk or cook for myself)
since September 2016. It sucks. I hope you trust me that this is not an elaborate scheme to get out of having to have a job. I really do want my health and my life
back!

So,
what is wrong with me and what can I do?

My
first stop was to the doctor. Blood tests indicated that the Epstein
Barr virus (glandular fever) was active in my body again. Rest up,
eat well and wait were the doctors orders.

No
worries. My summer job had just finished, I found someone to replace
me for some casual outdoors work I had lined up, and I pulled out of
a bushwalking trip I had been planning to the Du Cane Ranges. I had
recently finished my diploma of education, but I decided hold off
looking for any teaching work until I got better. I had had glandular
fever twice before and recovered both times in in about 4 months,
with out any complications.

10
months later, I now refer to my illness as chronic fatigue syndrome,
as the fatigue and sickness has gotten a lot worse, it has gone on
for so long, and many of my symptoms match those of other CFS
sufferers on the internet. I suspect something more is wrong with my
body than just glandular fever.

This
is not an official diagnosis. CFS, however is never a real diagnosis.
Its more that medical science cannot yet figure out what is wrong
with you, when all other tests have come up negative. Medical science
does not yet understand what causes CFS, nor how to cure it or even
ease its symptoms. It may not even be a single disease, seeing that
'fatigue' is the only unifying symptom, and try to name an illness
that does not have fatigue as a symptom! There are, however, a
baffling number of theories. A prominent one is that it is an immune
system dysfunction. But is it not known whether it is an
over-reaction (your immune system continues to battle a virus that is
no longer there), or an under reaction (your immune system is unable
to get on top of the virus). It could be the root cause is something
else all together, and it probably involves many different systems in
the body, including the endocrine, nervous, digestive and circulatory
systems, and how they interact. Trying to make sense of the
scientific theories often does my head in!

Many
people do make recoveries from CFS, but they claim a variety of
different, sometimes weird and wonderful cures. These include various
experimental drug and supplement regimes, accepting Jesus into your
heart, getting pregnant, moving to the desert to avoid all mould,
taking up yoga and adopting a completely raw food diet.

So
what are some of the things I have tried over the past 10 months, out
of the vast array of potential CFS cures? My decision making has been
guided by a fuzzy matrix of plausibility, accessibility and cost,
with the limitation that I only have a small amount of energy to
actually leave the house and visit health practitioners.

Here
is a list, and my evaluations:

(I
have not tried to explain the scientific reasons behind some of my
experiments, as it has already taken me 2 months to write this blog
post through the brain fog, and I can't remember them all. The reason
was probably something I read on the internet somewhere along the
way!)

Diet

I
didn't think my diet wasn't that bad before CFS. I never drank soft
drinks, rarely alcohol and never ate national pies or lollies. I'd
never had any serious gut issues or allergies, apart from some minor
IBS. However I will admit that during my teaching degree in 2015, I
did resort to eating a lot of toast, and when I was working in the
bush over the summer, I ate a lot of pasta, porridge and lentils. So
that was a lot of carbohydrates, and perhaps not the optimal amount
of fruit and vegetables. But I'd never thought about my diet before,
and I'd previously done 4 track ranger seasons, and never
come down with CFS before. Nevertheless, dietary changes have
been a big part of my 'try and get well' experiments.

What? Gluten
and dairy exclusion

Why? Gluten
and dairy are much maligned as evil foods that are supposed to do
horrible, inflammatory things to your gut, release toxins and make
you sick.

What
are its drawbacks? Restrictive. No easy food like toast. No
delicious food like cheese.

Did
it help? I dunno.

How
much of a chance have I given it? I strictly excluded dairy
and gluten for a 3 weeks trial, but I didn't notice any difference
when I reintroduced them. I tend to not don't eat much gluten any
more, just in case it is bad for me, and I try to avoid unfermented
dairy products for the same reason (this conveniently allows me to
eat cheese and yoghurt - because, hey I've got to have some pleasures
in my life).

Was
it worth trying? Yeah I guess so, because it does help a lot
of people.

What? High
fat, low carbohydrate diet

Why? This
diet was recommended by a doctor because it stops crash and burn
hunger cycles, which reduces overall stress on your body. The diet is
mainly vegetables with a liberal lashing of healthy fats and a small
amount of protein. Apparently if you eat few enough carbohydrates,
your body can enter a state called 'ketosis', which some people on
the Internet say is good for you for various reasons.

What
are its drawbacks? No cake and ice cream, and it can be hard
to be fussy with your diet when you are really sick and all you can
find to eat in the cupboard that's easy is weetbix.

Did
it help? Yes it has stopped me being so hungry all the time
and I eat far more vegetables now. It's a good idea I reckon, but I
still have CFS, despite the mountains of kale and litres of olive oil
I've eaten over the past year.

How
much of a chance have I given it? A pretty good chance, 80%
good for over 6 months I'd say, but I still cheat a bit. I try to
keep my carbs below 100g a day and I track it on an app called
cronometer.

Was
it worth trying? Yes

What? Intermittent fasting

Why? Fasting
is also supposed to be good for you. The Internet say, and I
watched a program about it on ABC's Catalyst. Plus my inactive life
has been leading to weight gain, so I assume that a bit of calorie
restriction can't hurt.

What
are its drawbacks? Sometimes fasting is a bit sad and
austere, and it can make the dizziness worse when I'm going through a
dizzy phase.

Did
it help? Dunno.

How
much of a chance have I given it? I
skip breakfast and do a 16 hour fast most days.

Was
it worth trying? Yeah. It's free. In fact, not eating saves
you money.

What? MCT
oil

Why? Whilst
on a low carb, high fat diet, this oil is supposed to help stimulate
ketosis, which some people on the Internet say is good for you, I
can't remember why.

What
are its drawbacks? Expensive. Tasteless.

Did it
help? Not that I noticed.

How
much of a chance have I given it? 1 tbsp most mornings for
the last month or so.

Is
it worth trying? Maybe.

What? Drinking
bone broth soup

Why? Home
made chicken soup, it cures all, they say. Healthy minerals and
things.

Did
it help? Dunno

What
are its drawbacks? It takes time and effort to make, but
otherwise its pretty cheap and tasty.

How
much of a chance have I given it? I have bone broth soup
every few days, when my mum makes me some!

Was
it worth trying? Yep.

What? Fermented
foods

Why? Fermented
foods are supposed to be super good for you. There's a theory that
all ill health stems back to the gut and increasing your healthy gut
flora is an all round top thing to do.

Did
it help? Dunno

What
are its drawbacks? None really, unless it turns our you are
allergic to fermented foods, which can be a thing apparently.

How
much of a chance have I given it? I regularly eat
sauerkraut, kombucha and miso, but I used to do that anyway.

Was
it worth trying? Yep, fermented foods are tasty and cheap,
even if they don't cure you from CFS.

Why?Supporting
my body with minerals and nutrients so my immune system can be strong
enough to smash the Epstein Barr virus in the face itself. A
doctor recommended some of them, a naturopath others. Some are just
supposed to be generally good for you, and some have been recommended
by other CFS patients on the Internet.

Did
it help? Dunno.

What
are its drawbacks? They cost money, and I kind of don't
believe in getting nutrition from bottles.

How
much of a chance have I given it? I take them most days.

Was
it worth trying? I guess so.

What? Astragalus
and siberian ginseng tea

Why? Its
what they give you at Goulds Naturopathy when you say you have
fatigue. I think it supposed to support the adrenals or something.

Did
it help? Dunno.

What
are its drawbacks? Expensive for tea.

How
much of a chance have I given it? I drank a lot of it when I
was first sick, but have waned off. I still drink it every now and
then, just in case it helps.

Was
it worth trying? It tastes pretty nice with chai spices.
Can't hurt.

What? Valerian
sleep powder

Why? Because
I got an attack of insomnia, and a friend delivered me some

Did
it help? Yes, I actually think it does help me go to sleep.
I take it when I can't get to sleep after an hour or so, and it
hasn't failed me yet. Hooray for sleep!

What
are its drawbacks? Just more pills, more money, more things.

Was
it worth trying? Yes, even if was the placebo effect, I
slept properly for the first time in a week after taking it and that
made my life so much better!

MOVEMENT,
MEDITATION AND STRESS RELEASE

One
theory about CFS is that your nervous system gets stuck in the fight
or flight response due to too much stress, which means your immune
system is suppressed. I didn't think I was overly stressed in the
couple of months leading up to getting sick, but maybe I was and
didn't know it. I did quite a stressful time during my teaching
degree in 2015, but that was 3 months before I got sick. Anyway, a
lot of people say they improve from CFS when they learn to chill
out.

What? Meditation

Why? Chilling
out, down regulating the stress response to allow the immune system
to work better. Also a coping strategy, and something that people say
is pretty a pretty good life habit in general.

Did
it help? Yes, I usually feel like a better human after
sitting. I notice tension in my body and release it. My eyes feel
better. I feel calmer. It helps me with being in the here and now,
which is useful, because thinking about the past makes me jealous of
my previous self, and thinking about the future is 1. sometimes
pretty difficult with brain fog, and 2. pretty useless when things
have become so uncertain.

What
are its drawbacks? I get epic pins and needles from sitting
cross legged! Sometimes when I feel really sick, I just don't
want to meditate and just 'sit with it'. I want to distract myself
from it as much as possible! (Audio meditations can be easier when
I'm feeling more sick, but some audio meditations are read by very
annoying people, and you need to spend time finding ones that you
like).

How
much of a chance have I given it? I try to sit for 20
minutes to half an hour most days.

Is
it worth trying? Yes.

What? Yoga

Why? To
down regulate the stress response and help you heal through gentle,
restorative movement. A lot of people claim yoga as an important part
of their recovery.

Did
it help? Well, actually, I used to religiously go to a yoga
class once a week for the past decade and loved it. A few months into
CFS I just couldn't do it any more as it was too much effort. It was
one of the last out of the house activities I was forced to give up.
However, I still do some restorative yoga, which is basically lying
on the floor in different positions, and is something that I can do
at least!

What
are its drawbacks? Active yoga takes a fair bit of energy
and muscle strength and moving my head up and down all the time can
make me feel woozy.

How
much of a chance have I given it? I have done a LOT of
restorative yoga.

Is
it worth trying? Yes, depending what level of sickness you
are at.

What? Medical
Qigong

Why? Gentle,
restorative movement to help with energy flow and healing.

Did
it help? Yes, I actually do feel better most times I do it.
It takes a lot less muscular energy than yoga, and is far gentler.

What
are its drawbacks? I don't do it when I feel super bad as it
does take energy.

How
much of a chance have I given it? Almost every day, 20-60
minutes. Sometimes I do it in my imagination. I haven't done it for a
while, due to relapsing and feeling tired and cranky again.

Is
it worth trying? Yes, plus its free to learn on youtube.

What? Tens
machine

Why? I
read something about vagus nerve stimulation being a potential
treatment on a CFS Internet forum, and how you can achieve that by
hooking a TENS machine to your earlobes! I also read that TENS
machines can help period pain, which I suffer from pretty epically,
so I purchased a cheap $50 machine for the purpose of a dual
experiment.

Did
it help? Nope, it just felt weird

How
much of a chance have I given it? I tired it once on my
uterus and once on my earlobes, and didn't notice any difference
either time, plus it felt pretty unpleasant on my earlobes!

Is
it worth trying? Nope.

What? Chi
machine

Why? This
is a machine that was lent to me by a friend of a friend. It is a
machine that wobbles your legs back and forth while you lie on the
floor. I think it is supposed to stimulate lymph flow and stuff.

Did
it help? Maybe. I haven't really noticed, but its not an
unpleasant thing to do.

What
are its drawbacks? Expensive if someone doesn't loan you
one.

How
much of a chance have I given it? I use it most days when
I'm pretty low and unable to go for a walk.

Is
it worth trying? If you can get a free one.

What? Annie
Hopper's Dynamic Neural Retraining Method

Why? A
friend of a friend lent me the DVD package, as she said it helped her
with her CFS. Is is a protocol developed by an American lady, Annie
Hopper who claims to have cured herself of multiple chemical
sensitivities. The process is supposed to work for CFS as well. The
theory is that the disorder is in the limbic system, which is part of
your brain, and that you can cure yourself through doing
neuroplasticity exercises that 'rewire your brain'.

Did
it help? Hmm. No. Well, after watching the DVD series and
doing the exercises for a little bit, I still have CFS, although I
didn't actually do 1 hour a day for 6 months, like I was supposed to.
However, I do think its an interesting and valid theory that the
disorder lies in the autonomic nervous system. I think the exercises
could probably help you cope with having CFS, especially if you are
an American and don't mind positive thinking guff, but pretty
implausible that they could actually cure you.

What
are its drawbacks? I found Annie really annoying and too
full of positive thinking guff, so the DVDs often made me feel
cranky. The content is 75% testimonials: “I went to Annie's course
and was cured in 3 days”, 20% positive thinking guff, and probably
less than 5% actual content. I think it borders on pretty dangerous
territory, that if you don't believe enough, you
won't get better, even though I think believing that you can get
better is important. Or that if you don't love
yourself enough, you won't get better, even though loving
and being gentle with yourself is important. This ignores the fact
that CFS is a real disease that deserves far more funding and
attention than it has received for medical research.

How
much of a chance have I given it? Well, admittedly not one
hour a day for 6 months, but I did try saying the words and doing the
actions to myself for a little while, and sometimes I still do say
some of the words to myself when things get really bad, and it can
help me let go a bit of stress about feeling really sick.

Is
it worth trying? I think parts of the 'system' would help
you cope with having CFS, but I'm pretty sceptical about it curing
you, despite of and because because of all the testimonials sounding
'too good to be true'. It depends on your personality.

What? Being
true to my authentic self

Why? Many,
many CFS self help books and 'how I healed myself from CFS' videos on
youtube say that this is the answer

Did
it help? No! This idea makes me very very cranky and shitty!

What
are its drawbacks? Totally ignores this is a physiological
not a psychological illness, no matter how much those two might be
interlinked. Makes me very grumpy (see above).

How
much if a chance have I given it? Well, actually, I've been
trying that one out my whole life, and of course I'm not always doing
it perfectly, but hey, I'm not perfect! We don't live in a perfect
world! Life is always nuanced and we need to make compromises and
work with what we've got. I'm sure I've still got a whole lot of
lessons and good and humbling to learn about being a human, but I
have never ever ever tried to be anyone other than myself.

Is
it worth trying? No comment.

OTHER
TREATMENTS

What? Cranio
sacral therapy

Why? I
read somewhere it might help. I don't really understand the theory
behind it, but I do often feel weird in the area where my head meets
my neck, and wonder if that is where the problem or inflammation may
be.

Did
it help? It definitely made me feel something. I was usually
wiped out afterwards, but hopefully in a good way. The practitioner
was also a good counsellor and that helped me talk about what I was
doing through.

What
are its drawbacks? It costs money and you have to drive
there.

How
much of a chance have I given it? 4-5 treatments a few
months ago when I could still drive.

Is
it worth trying? Yes.

What? Acupuncture
/ Traditional Chinese Medicine

Why? Support
the body to get better on its own, through meridians and acupuncture
points and other things that the Chinese have been doing for
thousands of years.

Did
it help? I didn't notice any effect.

What
are its drawbacks? $80 a session, need to drive there.

How
much of a chance have I given it? Only two sessions with a
nice practitioner, but I didn't notice any improvement, and by this
stage driving to the other side of town was a pretty stressful
activity for me. I also visited another lady earlier on, who was
recommended by a couple of people. She administered acupuncture and
some hands-on body work, then prescribed some restorative yoga poses
(which I still do). She then told me that my body had told her
somebody was angry at me, and perhaps I would like to sort that out.
This statement was right at the end of the appointment with no chance
to ask her what she meant, and left me feeling half worried about
what I might have inadvertently done to someone, and half totally
incredulous about her treatment method and skills, which I had
temporarily suspended my scepticism to receive. Over time those
proportions have changed to mostly incredulous and annoyed, rather
than worried about having made someone angry (NB. If this is you, I
am sorry, but you need to take responsibility for your own feelings
and tell me so we can talk about it, voodoo is so last century!)

Is
it worth trying? Maybe.

What? Sauna

Why? I
thought maybe I could cook the Epstein Barr Virus to death or at
least help my body 'detox' or something. Plus, our house happens to
have a sauna downstairs, so it was worth a shot.

Did
it help? Nope

What
are its drawbacks? I find saunas an intense physical
experience at the best of times, not least when I am feeling sick and
fragile.

How
much of a chance have I given it? I tried a few times, it
wiped me out.

Is
it worth trying? Maybe.

What? Hot
baths with magnesium salts

Why? Supposed
to relax you and maybe something else to do with the magnesium.
Detoxing or something? I can't remember. Its just another one of
those things supposed to be good for you.

Did
it help? Yeah, baths are something you can occupy your time
with when you have CFS, and at least you can't do anything else while
you're in them so they force you to relax! I'm still not better
though!

What
are its drawbacks? None. Oh, wet hair I guess, which is one
of the reasons I shaved my head.

How
much of a chance have I given it? I've had quite a lot of
baths.

Is
it worth trying? Yep.

What?
Detoxing my life

Why?
You know, chemicals and
pesticides and things. Bad for you.

Did
it help? I've been a hippy for
a long time now and I still got CFS! I haven't used
shampoo or stinky soaps, and only very rarely deodorant (sorry mum) for over a decade.
The only products I use are a bit of eco tea-tree laundry powder (so
eco its brown!), eco-bulk dishwashing detergent, hippy soap, hippy
toothpaste and hippy sunscreen very occasionally. I drink out of a
stainless steel water bottle, eat a good proportion of organic food
and I live in a small city at the bottom of the world with plenty of
fresh mountain and ocean air. Um, so NO. It didn't help!

What
are its drawbacks? Well,
sometimes 'chemicals' are difficult to avoid.

How
much of a chance have I given it? See
above. 10-12 years of being a hippy. BUT, I do still drink tap water!
Maybe that's my problem.

Is
it worth trying. Well, yeah,
most of that stuff is bullshit anyway, and washing it down the drain
really sucks for the fishies in the ocean.

What? Pacing

Why? This
is probably, really my only hope, as it has the best scientific
evidence behind it. It involves finding out what level of activity I
experience no symptoms at (sickness or wooziness), and staying
strictly within that envelope. I can then experiment with increasing
it by infinitesimal amounts (under 5%), with the hope that I can one
day increase it back to pre-sickness levels, if I avoid overdoing it
and crashing back in the pit. Key parts of pacing are procrastination
(don't do today what I can do tomorrow!), only finishing half a job,
and pre-emptive rest, even if I don't feel tired at the time.

Did
it help? I think its my only hope really. I have been
intending to 'pace' the whole time I have been sick, but as my body
is no longer functioning like it used to my entire life up until now,
it is very difficult to know where my invisible limits are. It is
very easy to cross them when I am either having a good time with
friends, or there's something that really needs to be done (e.g.
cleaning up broken glass, collecting the wheelie bin and all the
rubbish that blew down the street in a wind storm). Only for the last
month have I been wearing a quality pedometer on my wrist that can
actually track how many steps I do a day, which is really hard to
know otherwise, so hopefully I can gain a bit more data on where the
boundaries of my envelope are.

What
are its drawbacks? Its boring, lonely, frustrating and
non-intuitive. Its requires vast amounts of patience. I need to rely
more on mathematics than feel, as it very difficult to know the point
when I have done too much. I don't get the feedback until later, or
the next day, when I get Post Exertional Malaise (a common symptom of
CFS). Accidentally over-doing it without knowing it at the time can
cause a crash that will take months to recover from. Although I am
now wearing my pedometer to track the steps I do (currently about
1300 without getting worse), I cannot track things like
socialisation, using my brain, whether those steps are uphill or
flat, stress, or heavy lifting.

Is
it worth trying: Yes I think its really my only hope. Its
just going to take a very long time, and probably a few more crashes
along the way as I learn where my limits are, especially as my limits
will change over time.

What
will I try next?

There
are still plenty of things to try from the plethora of CFS cures on
the Internet! What might I try this year?

Get
a test for Lyme disease, just to make sure that isn't a cofactor in
my illness.

Go
back to the doctor just to make sure there aren't any other
diagnosable diseases we should test for (going to the doctor is a
big energetic cost for me, and from my reading, I don't think there
is anything else, but just in case...)

Ask
the doctor about any other treatments he has heard of, then go away
and research them myself before committing to anything.

Ask
the doctor if there could be a link with endometriosis, and whether
I should get tested for this (the diagnostic procedure involves day
surgery, which I'm totally not up for yet).

Grow
and juice wheat grass. Why not, its cheap and can't hurt.

Go
back to the cranio-sacral therapist once I have enough energy to
organise appointments and transport (too complicated at the moment).

Continue
with supplements, medical qigong, meditation and the other things
that might help, or at least don't make me cranky.

Probiotics
(even though I don't think I have bad guts)

Other
supplements I could try but need to research more are: Alpha Lipoid
Acid, Lysine, Taurine, Vitamin E, mushroom extracts, NADH, D-Ribose.
(I need to plan a controlled experiment to see if they actually make
any difference or I'm just wasting money).

Extreme
and disciplined pacing, using my pedometer!

I'll also keep reading and researching!

(Oh, and the thought of a completely raw food diet makes my stomach clench in protest; I'm sure that Jesus was a great fella but I do have doubts about his ability to step up and banish the EBV from my cells or resurrect my immune system right now; central Australia is a very long way from my friends and parents, so who would bring me chicken soup if I moved to the desert? (plus my house isn't mouldy); and while getting pregnant and ending up with a helpless newborn baby as well as my helpless sick self to look after sounds like a fabulous idea, its just that being a bed bound grumpy sick person who can't string a coherent sentence together whilst sitting upright doesn't do much for my romantic prospects right now. Thanks for the suggestions though internet! Xxx J)

No comments:

Post a Comment

About Me

Usually I'm an outdoorsy, community-activist-y, garden-growing kind of person who likes sea kayaking, mountain climbing, body surfing and riding my bike. But currently I have an illness known as 'chronic fatigue syndrome', so I am person that dwells in 'slowtown' where the main activities are resting, very slow household-based activities, crocheting, and reading kids books. This is the 3rd and worst time I've had it, this time since March 2016. These are some of my insights from this time of huge learning for me. Several other people's cfs blogs have really helped me, and I would be honoured if this blog were able to help anyone else.